Hello,
I'm just trying to take things one day at a time here. Every day I feel a tiny bit more energy and a tiny bit more balanced. I've managed to get through a full week of work, go for some long walks {like around Green Lake on the solstice}, and get my diet back to normal {and mostly raw!}. Being able to eat iodine-containing foods again is wonderful! Last night I got to enjoy a seaweed salad. I still have almost no sense of taste, and I'm frustrated that it doesn't seem to be returning, as it should be by now. Some patients never get their sense of taste back, but that can't possibly be me. I suppose I just have to be patient. My neck pain is really improving, and now that my nausea has resolved as well I feel much less miserable. I got a massage on Thursday and I have to say it is truly the time when I can relax the most. My neck muscles are so very tight but I hope that they'll eventually begin to release as my stress and pain levels go down.
I have been filling my spare time the last few weeks with watching documentaries and reading books about natural cancer cures. As one of my dear friends said, "wouldnt it be nice if cancer patients could just stop worrying about money and just focus on healing?" But the bills don't stop because you have cancer, the rent doesn't pay itself, and your paycheck doesn't come if you don't go to work. In fact, you get tons of extra bills from the doctors and hospitals. Life carries on as normal and you have to try to be as normal as you can while trying to heal. How amazing it would be to be able to stop life, and attend a healing clinic, such as the Hippocrates Health Institute or The Gerson Therapy's Clinica Nutricion y Vida. But we all know that's not what life is like. So I am going to do all of the research I can about how to heal myself within the context of my everyday life. If you want to see all of the resources I'm using for my information, please check out the link I created at the top of my blog. I would really appreciate anyone's opinion who has seen any of these documentaries or read the books.
Coming up this week: an appointment with Dr. Failor at the SCCA, another massage, and getting back into yoga and zumba!
Wishing you all a sunny, summery week!
Love,
Lisa
Saturday, June 25, 2011
Sunday, June 19, 2011
Latest results
Hello and happy Father's Day! Jesse and I just got home from a fun trip to Roche Harbor where we took my dad to lunch with my brothers and Madi.
Sorry I've been MIA, it's taken me a few days to process everything enough to be able to write about it. I had my appointment with Dr. Mankoff on Friday, and like the first scan, the second one showed a lot more activity in my neck than anticipated. The thing about this type of scan is it is vague, it shows the activity but since it doesn't really show other tissues, it's hard to see exactly where the activity is more specifically than 'the neck.'
The most concerning finding was actually in my bloodwork. My thyroglobulin (Tg) level (this is the tumor marker for thyroid cancer, similar to PSA for men for prostate cancer) was 262, which is very high. My TSH was 58. These results mean there is a lot more cancer remaining in my body than we want, probably in the lymph nodes and hopefully no where else.
So here's our plan. We are going to give the RAI a few months to work, and then in September I'll have an ultrasound to determine if I need a biopsy and more surgery. In the meantime my bloodwork will be monitored and I'll stay on my thyroid hormones for suppressive therapy.
So, the good news is, I have the whole summer free of treatment besides swallowing a tiny pill every day. I'm looking forward to lots of long Seattle summer days. Seattle summers really are the best, although much too short. I'm happy to be able to finally make plans for the summer, though, because until now I've been cautious to plan much because of not knowing my treatment schedule.
I won't have much news of my treatment to share until September, but I will still write about life and other goings on :)
Love,
Lisa
Sorry I've been MIA, it's taken me a few days to process everything enough to be able to write about it. I had my appointment with Dr. Mankoff on Friday, and like the first scan, the second one showed a lot more activity in my neck than anticipated. The thing about this type of scan is it is vague, it shows the activity but since it doesn't really show other tissues, it's hard to see exactly where the activity is more specifically than 'the neck.'
The most concerning finding was actually in my bloodwork. My thyroglobulin (Tg) level (this is the tumor marker for thyroid cancer, similar to PSA for men for prostate cancer) was 262, which is very high. My TSH was 58. These results mean there is a lot more cancer remaining in my body than we want, probably in the lymph nodes and hopefully no where else.
So here's our plan. We are going to give the RAI a few months to work, and then in September I'll have an ultrasound to determine if I need a biopsy and more surgery. In the meantime my bloodwork will be monitored and I'll stay on my thyroid hormones for suppressive therapy.
So, the good news is, I have the whole summer free of treatment besides swallowing a tiny pill every day. I'm looking forward to lots of long Seattle summer days. Seattle summers really are the best, although much too short. I'm happy to be able to finally make plans for the summer, though, because until now I've been cautious to plan much because of not knowing my treatment schedule.
I won't have much news of my treatment to share until September, but I will still write about life and other goings on :)
Love,
Lisa
Thursday, June 16, 2011
Another scan day
I woke up this morning to another bout of nausea. I think it is related to anxiety, because today I have another full body scan at 11am. Although I could probably get the results today if I wanted, I am going to wait and get them from Dr. Mankoff tomorrow at my appointment at 2 pm. This way we can discuss our plan at the same time, instead of me having the results and wondering over the next 24 hours what they mean.
It feels like I'm always waiting...waiting for the next test, the latest results, the next treatment. But I know this will be my life for the next five or more years, until my doctors can tell me that my cancer is cured. The key will be finding balance and peace in all those moments of waiting.
I went back to work yesterday and managed to work through a full, busy day. I work 10+ hour shifts, and there usually isn't much sitting involved, so I've obviously come a long way in my recovery to be able to be back to work now. I love feeling my energy (and happiness) returning bit by bit every day. I'm off work today for my scan, and leaving early tomorrow for my appointment with Dr. Mankoff at the Seattle Cancer Care Alliance (SCCA), so it is nice to have a short week to get back into the swing of things.
I'll update you all tomorrow after my appointment!
xoxo,
Lisa
It feels like I'm always waiting...waiting for the next test, the latest results, the next treatment. But I know this will be my life for the next five or more years, until my doctors can tell me that my cancer is cured. The key will be finding balance and peace in all those moments of waiting.
I went back to work yesterday and managed to work through a full, busy day. I work 10+ hour shifts, and there usually isn't much sitting involved, so I've obviously come a long way in my recovery to be able to be back to work now. I love feeling my energy (and happiness) returning bit by bit every day. I'm off work today for my scan, and leaving early tomorrow for my appointment with Dr. Mankoff at the Seattle Cancer Care Alliance (SCCA), so it is nice to have a short week to get back into the swing of things.
I'll update you all tomorrow after my appointment!
xoxo,
Lisa
Monday, June 13, 2011
Recovery
Good morning,
I'm blogging here from my awesome new hangout, aka our balcony, made cozy thanks to a new wicker loveseat that compliments the wicker chair & coffee table I already had. It is quite breezy and cool today, but the balcony is sheltered enough that being wrapped up in a blanket means I'm perfectly warm and protected while I watch the leaves swirling around below and Zeus keeps a watchful eye on the goings on of the property. Jesse also hung my herb garden planters from the railing, and if I feel a spurt of energy today I may venture down the street to City People's to find some lavender and basil to plant in the extra pots I have. I have wanted to create this space for a long time, and I'm so glad it is finally becoming what I'd dreamed it to be.
The nausea is subsiding and I managed to eat two normal meals yesterday. Brunch at Cafe Flora, thank you to a very generous gift certificate from the doctors I work for, helped me get past the psychological part of the nausea and focus on the delicious taste of the food I was consuming. An impromptu visit from my dearest friends and a sunny nap in the park made for a perfect day of recovery and nourishment.
The soreness in my neck seems to be getting worse, or maybe it's only that I notice it more now that the nausea is subsiding. But that's fine with me, I'd far rather deal with this pain than nausea. Unfortunately the extreme bloating that my doctor warned me about did manifest itself, and like he said, it looks like someone tied a very tight noose around my neck - my face looks like a giant bubble! He promised it is only water weight and will resolve quickly. Every morning when I swallow my thyroid hormone pill it gives me hope knowing that every day I'm getting closer to feeling normal. I've started all of the supplements that my naturopath recommended which will help repair the damage on my body from the radiation and support my adrenal function to help with my hypotension. Maybe it's only psychological but I think it's helping already.
I've been so inspired by the people who have reached out and said that they were inspired by my blog that I decided to create a section to this blog to share the whole beginning of my story, the part before I started this blog. At first I only intended that close family & friends would read this as a way to stay updated with my treatment, and I had no idea that so many people would want to read this. I'm so excited that people want to listen and that they feel they get something out of it, so I want to invite you to share my blog with anyone you think would want to read it. I am creating a page called My Story that will be able to be accessed from the menu at the top of the website so that anyone can get an introduction to how this diagnosis and journey began for me.
Lots of love,
Lisa
I'm blogging here from my awesome new hangout, aka our balcony, made cozy thanks to a new wicker loveseat that compliments the wicker chair & coffee table I already had. It is quite breezy and cool today, but the balcony is sheltered enough that being wrapped up in a blanket means I'm perfectly warm and protected while I watch the leaves swirling around below and Zeus keeps a watchful eye on the goings on of the property. Jesse also hung my herb garden planters from the railing, and if I feel a spurt of energy today I may venture down the street to City People's to find some lavender and basil to plant in the extra pots I have. I have wanted to create this space for a long time, and I'm so glad it is finally becoming what I'd dreamed it to be.
The nausea is subsiding and I managed to eat two normal meals yesterday. Brunch at Cafe Flora, thank you to a very generous gift certificate from the doctors I work for, helped me get past the psychological part of the nausea and focus on the delicious taste of the food I was consuming. An impromptu visit from my dearest friends and a sunny nap in the park made for a perfect day of recovery and nourishment.
The soreness in my neck seems to be getting worse, or maybe it's only that I notice it more now that the nausea is subsiding. But that's fine with me, I'd far rather deal with this pain than nausea. Unfortunately the extreme bloating that my doctor warned me about did manifest itself, and like he said, it looks like someone tied a very tight noose around my neck - my face looks like a giant bubble! He promised it is only water weight and will resolve quickly. Every morning when I swallow my thyroid hormone pill it gives me hope knowing that every day I'm getting closer to feeling normal. I've started all of the supplements that my naturopath recommended which will help repair the damage on my body from the radiation and support my adrenal function to help with my hypotension. Maybe it's only psychological but I think it's helping already.
I've been so inspired by the people who have reached out and said that they were inspired by my blog that I decided to create a section to this blog to share the whole beginning of my story, the part before I started this blog. At first I only intended that close family & friends would read this as a way to stay updated with my treatment, and I had no idea that so many people would want to read this. I'm so excited that people want to listen and that they feel they get something out of it, so I want to invite you to share my blog with anyone you think would want to read it. I am creating a page called My Story that will be able to be accessed from the menu at the top of the website so that anyone can get an introduction to how this diagnosis and journey began for me.
Lots of love,
Lisa
Friday, June 10, 2011
Home
Good news - I got discharged home this morning! My radiation levels were low enough that it was safe for me to come out of isolation. My nausea has been coming and going, and thankfully I was sent home with an Rx for Zofran to help. Being in the cancer wing, my nurses were self-proclaimed "nausea-queens" and knew exactly what to tell my doctor to order me each time I was experiencing nausea. They knew which ones to take for what time of day and when I needed something for nausea/vomiting prevention or for acid reduction. I was actually able to eat a little lunch and keep it down. Surprisingly, the thought of vegetables (especially raw) isn't very appealing to me at all. My body just wants soup, or the BRAT diet (bananas, rice, applesauce, toast) (the name is fitting huh?). When the nausea subsides I crave more substantial foods, but I'm only trying them in small doses. It is thrilling to be off the restrictions of the low-iodine diet. The thought of being able to eat food that someone else has prepared is so nice! I have really missed tofu and soy sauce! Hopefully by tomorrow the nausea will be mostly resolved; it has already improved so much since Wednesday night.
My incredible coworkers have arranged to feed me every night until I return to work on Wednesday next week! What a huge relief it is to not have to prepare any meals. I know and appreciate so much how lucky I am to be part of a team that cares and supports me so much. I haven't had to worry about missing any of the days of work that I've had to because they always find someone to cover me, even though I've long since used up all of the PTO I had accrued.
Having been a patient in the cancer wing, I saw many patients far worse off than myself. I saw patients walk by with no hair, toting their IV carts with four bags dripping into the ports hanging from their chests. This really put my symptoms in perspective, and a few days in isolation seemed like a fairly easy treatment. At the same time it was scary - this could become me. But don't worry, it just gave me the extra fuel I needed to fight this in every way I can, and most importantly, in the most natural ways possible. To me the radioactive iodine wasn't really a choice I had, if I didn't do it my doctor guaranteed that my cancer would "come back" - and from the scans, we know it never really was "gone," although my surgeon removed my thyroid and the nodes from my right neck, the scans showed more positive nodes still in there. The radioactive iodine is usually a very effective treatment for thyroid cancer after surgery, so even in my moments leading up to the treatment that I wanted to just quit the low iodine diet and have my thyroid hormones back, I knew in my heart that I needed to do this.
Next week I have another full body scan on Thursday 11am, and an appointment with my oncologist at the Cancer Care Alliance on Friday at 2pm to discuss the results.
Of course I will keep you all updated. Thank you for the amazing emails and phone calls, I can barely keep up with them all! Now that I don't have to type through a plastic bag and can actually charge my iPad and phone, I'll be able to catch up more.
All my love,
Lisa
A photo from before going to the ballet last Saturday
My incredible coworkers have arranged to feed me every night until I return to work on Wednesday next week! What a huge relief it is to not have to prepare any meals. I know and appreciate so much how lucky I am to be part of a team that cares and supports me so much. I haven't had to worry about missing any of the days of work that I've had to because they always find someone to cover me, even though I've long since used up all of the PTO I had accrued.
Having been a patient in the cancer wing, I saw many patients far worse off than myself. I saw patients walk by with no hair, toting their IV carts with four bags dripping into the ports hanging from their chests. This really put my symptoms in perspective, and a few days in isolation seemed like a fairly easy treatment. At the same time it was scary - this could become me. But don't worry, it just gave me the extra fuel I needed to fight this in every way I can, and most importantly, in the most natural ways possible. To me the radioactive iodine wasn't really a choice I had, if I didn't do it my doctor guaranteed that my cancer would "come back" - and from the scans, we know it never really was "gone," although my surgeon removed my thyroid and the nodes from my right neck, the scans showed more positive nodes still in there. The radioactive iodine is usually a very effective treatment for thyroid cancer after surgery, so even in my moments leading up to the treatment that I wanted to just quit the low iodine diet and have my thyroid hormones back, I knew in my heart that I needed to do this.
Next week I have another full body scan on Thursday 11am, and an appointment with my oncologist at the Cancer Care Alliance on Friday at 2pm to discuss the results.
Of course I will keep you all updated. Thank you for the amazing emails and phone calls, I can barely keep up with them all! Now that I don't have to type through a plastic bag and can actually charge my iPad and phone, I'll be able to catch up more.
All my love,
Lisa
A photo from before going to the ballet last Saturday
Thursday, June 9, 2011
Nausea
Good morning,
I've been up all night with pretty bad nausea. They are trying different meds to help me with it. I've stopped dry heaving, thank goddess, but still feeling quite queasy. Sorry for the phone calls I've missed, I'm just going to try to get some rest this morning and hope to get over this yucky feeling soon.
L
I've been up all night with pretty bad nausea. They are trying different meds to help me with it. I've stopped dry heaving, thank goddess, but still feeling quite queasy. Sorry for the phone calls I've missed, I'm just going to try to get some rest this morning and hope to get over this yucky feeling soon.
L
Wednesday, June 8, 2011
Metamorphosis
Cancer is my cocoon. I began this journey as a caterpillar. A strong, nourished caterpillar, hungry for more but with no idea of the transformation to come. I will emerge from this a butterfly. Weak and fragile at first, but as my wings dry I will discover that I can flutter as high as I can dream; that I will have become more beautiful than I ever had the potential to imagine.
*****************************************************
I chose to create this metaphor because the butterfly represents the butterfly-shaped thyroid gland that was taken from me, and because of all that butterflies represent across cultures: rebirth, long life, the soul, marital bliss, and transformation, to name a few.
*****************************************************
I chose to create this metaphor because the butterfly represents the butterfly-shaped thyroid gland that was taken from me, and because of all that butterflies represent across cultures: rebirth, long life, the soul, marital bliss, and transformation, to name a few.
Location:NE Pacific St,Seattle,United States
Hello from the hospital
Okay, I'm all situated in my hospital room here, waiting for the nuke team to come give me my dose. I set my phone to forward calls to my hospital room so you can actually just reach me at my regular phone number. No texting though.
I've got a lovely view of Union Bay here, and the room looks just like a normal hospital room except for everything is covered in protective wrap. Every day someone will come and measure how "hot" I am with a wand to determine when it's safe for me to go home. My nurse said since I'm young and healthy I'll probably clear it out quickly and get to go home sooner rather than later.
Enjoying my last minutes getting to be next to Jesse because after my dose people will have to stand outside the doorway behind a lead screen. After I get home I'll have to keep at least three feet from people for a couple days, and for an entire week after I'm discharged I have to take care to not share any bodily fluids, ie, no sharing silverware, no kissing, and flushing the toilet twice.
Really looking forward to being off this low-iodine diet once I'm discharged!
I'll keep you updated via iPad which is inside a plastic bag. Thank you all for bringing me so many books to read - it was hard to choose which one to start with!
Love,
Lisa
I've got a lovely view of Union Bay here, and the room looks just like a normal hospital room except for everything is covered in protective wrap. Every day someone will come and measure how "hot" I am with a wand to determine when it's safe for me to go home. My nurse said since I'm young and healthy I'll probably clear it out quickly and get to go home sooner rather than later.
Enjoying my last minutes getting to be next to Jesse because after my dose people will have to stand outside the doorway behind a lead screen. After I get home I'll have to keep at least three feet from people for a couple days, and for an entire week after I'm discharged I have to take care to not share any bodily fluids, ie, no sharing silverware, no kissing, and flushing the toilet twice.
Really looking forward to being off this low-iodine diet once I'm discharged!
I'll keep you updated via iPad which is inside a plastic bag. Thank you all for bringing me so many books to read - it was hard to choose which one to start with!
Love,
Lisa
Location:NE Pacific St,Seattle,United States
Really quick, getting ready for my hospital stay here.
If you want to reach me, call my google voice number: (206) 588-6372
You should always be able to reach me on that number. I'll set it up to ring to my hospital room, and in the mean time and after I am discharged it will ring to my cell. I should also be able to use this number to call out and make free long-distance calls from my hospital room - so if you see a call from this number, it's a poor lonely girl in the hospital looking for someone to chat with.
xoxo,
Lisa
If you want to reach me, call my google voice number: (206) 588-6372
You should always be able to reach me on that number. I'll set it up to ring to my hospital room, and in the mean time and after I am discharged it will ring to my cell. I should also be able to use this number to call out and make free long-distance calls from my hospital room - so if you see a call from this number, it's a poor lonely girl in the hospital looking for someone to chat with.
xoxo,
Lisa
Monday, June 6, 2011
Results
***drumroll***
Okay! So the good news is, there don't appear to be any metastasis beyond my neck! The poorly differentiated cells do not take up iodine as well, so it's possible that some didn't show up, and no scan is able to detect microscopic disease, but that spot on my lung didn't glow so this is great.
The bad news is my neck looked a lot worse than expected. This means there are some positive lymph nodes that were missed during the surgery. We expected some uptake because some margins were left in order to spare the parathyroids and vocal chords. This is normal and it is expected that the RAI will destroy that remaining tissue. We hope that the RAI will also do it's thing and destroy those positive nodes as well!
I was very frustrated at UW Medicine today because I had to wait for what seemed like forever for my scan, and then it took over 2 hours! The scanner is a special scanner just for thyroid cancer. It detects the gamma rays emitted from the radioactive spots. The lens is only centimeters from your face, so if you are claustrophobic, good luck. Peering over the doctor's shoulder at the computer screen, I have to say it was quite alarming seeing my liver and bladder glowing on the scans. This is normal and expected as the iodine is metabolized and excreted. What we were concerned about, besides the neck, were the lungs and bones, as that is the most common first destination for thyroid cancer cells. I just don't like knowing that there is all that radiation inside of my body - I want it out of there!
I had a great consult today with a new naturopath, Kathleen Pratt. She is at the same clinic as the last ND that I saw. She listened to my needs, let me talk as much as I needed, and worked with me on my concerns, the biggest of which was getting rid of the radiation in my body (after the treatment, of course). We talked about big doses of antioxidants because those will prevent damage from the radiation. She was so thrilled to hear about my diet and said that I am doing very great things for my body. She prescribed me some antioxidant supplements. One of my current concerns is severe orthostatic hypotension. This occurs when one repositions from lying to sitting to standing and blood pressure drops suddenly, equalling dizziness, and for me, loss of vision for a few moments. I've had it in the past but since my surgery it has been almost scary at times. This can be caused be decreased mineral absorption, and I'll be taking a mineral supplement after I get out of the hospital (I can't take any vitamins or supplements right now due to iodine content). Interestingly, orthostatic hypotension can also be caused by stress, as the adrenals are pumping out all of this cortisol. She prescribed me an adrenal support supplement to take as well. This really makes sense, as the times I've suffered from this condition can definitely be correlated with times of stress in my life.
Another cancer treatment we discussed is IV vitamin C. When taken orally, there is a limit to how much the body will absorb. (Vitamin C is absorbed in the small intestine, in case you were wondering.) But much higher doses can be absorbed through IV. This will help to minimize damage from radiation in my body. This can be followed by an even higher dose of vitamin C, in which case it actually becomes a pro-oxidant and kills cancer cells! This is certainly a treatment I am going to consider, especially if I decide to forgo the external beam radiation treatment.
Tomorrow is back to a normal work day. I'm getting my energy levels back up from my test dose on Friday, and feeling to about how I was on Thursday. I can't believe how much starting a raw diet has helped me, even though my metabolism has continued to plummet more and more each day. My TSH is above 30 now* (if you know anything about thyroid hormones, you won't even be able to imagine how that probably feels). Yet since starting this diet I have gained more energy than right before I started the diet, my hair loss has almost stopped, my bloating improved by about 3 pounds (I'm now only 2 pounds over my weight right before I stopped the hormones), and digestion is completely normal now. My naturopath wasn't surprised at all.
My RAI treatment is still scheduled for Wednesday. I'll be admitted at noon and staying in the hospital for 2 to 4 days in isolation, but there is an open door so visitors are able to talk to me from the doorway (they just can't come in my room). I'll have my cellphone with me in a plastic baggie and hopefully I can access the touch screen sufficiently through that, but once the battery is dead I won't be able to recharge it. I'll have a phone in my room (you remember, the old-fashioned kind, connected to a plug in the wall!), though, if you want to talk to me. If I can fit it into my busy schedule of reading, napping, watching TV, and...um I can't think of anything else ;-)
Apparently Jesse and I are in denial about my impending hospital stay because we just bought tons more produce today. You should see our fridge, it's completely packed with veggies! We also brought home the newest member to our family: a fancy grill! (I don't plan on being 100% raw! and it's Lisa-approved as it has a built in basket for veggies) So please expect lots of BBQ's at the Marsaudon-Follet residence this summer.
The amount of relief, balance, and peace I feel right now is immense. Having put that scan behind me, which I've been anticipating since the day of my diagnosis on March 18, feels so good. The results weren't perfect and I felt some disappointment at first, but the sense of relief that there are no apparent distant metastasis far overwhelms that. Now we just need this RAI to kick butt and destroy all of that cancer in my neck! Go radioactive iodine, Go!
Thank you all for sharing so much love & support. I really felt it today.
xoxo,
Lisa Rose
*Coming soon: a short lesson on thyroid hormones for those of you who aren't healthcare providers nor experts because of personal thyroid issues.
Okay! So the good news is, there don't appear to be any metastasis beyond my neck! The poorly differentiated cells do not take up iodine as well, so it's possible that some didn't show up, and no scan is able to detect microscopic disease, but that spot on my lung didn't glow so this is great.
The bad news is my neck looked a lot worse than expected. This means there are some positive lymph nodes that were missed during the surgery. We expected some uptake because some margins were left in order to spare the parathyroids and vocal chords. This is normal and it is expected that the RAI will destroy that remaining tissue. We hope that the RAI will also do it's thing and destroy those positive nodes as well!
I was very frustrated at UW Medicine today because I had to wait for what seemed like forever for my scan, and then it took over 2 hours! The scanner is a special scanner just for thyroid cancer. It detects the gamma rays emitted from the radioactive spots. The lens is only centimeters from your face, so if you are claustrophobic, good luck. Peering over the doctor's shoulder at the computer screen, I have to say it was quite alarming seeing my liver and bladder glowing on the scans. This is normal and expected as the iodine is metabolized and excreted. What we were concerned about, besides the neck, were the lungs and bones, as that is the most common first destination for thyroid cancer cells. I just don't like knowing that there is all that radiation inside of my body - I want it out of there!
I had a great consult today with a new naturopath, Kathleen Pratt. She is at the same clinic as the last ND that I saw. She listened to my needs, let me talk as much as I needed, and worked with me on my concerns, the biggest of which was getting rid of the radiation in my body (after the treatment, of course). We talked about big doses of antioxidants because those will prevent damage from the radiation. She was so thrilled to hear about my diet and said that I am doing very great things for my body. She prescribed me some antioxidant supplements. One of my current concerns is severe orthostatic hypotension. This occurs when one repositions from lying to sitting to standing and blood pressure drops suddenly, equalling dizziness, and for me, loss of vision for a few moments. I've had it in the past but since my surgery it has been almost scary at times. This can be caused be decreased mineral absorption, and I'll be taking a mineral supplement after I get out of the hospital (I can't take any vitamins or supplements right now due to iodine content). Interestingly, orthostatic hypotension can also be caused by stress, as the adrenals are pumping out all of this cortisol. She prescribed me an adrenal support supplement to take as well. This really makes sense, as the times I've suffered from this condition can definitely be correlated with times of stress in my life.
Another cancer treatment we discussed is IV vitamin C. When taken orally, there is a limit to how much the body will absorb. (Vitamin C is absorbed in the small intestine, in case you were wondering.) But much higher doses can be absorbed through IV. This will help to minimize damage from radiation in my body. This can be followed by an even higher dose of vitamin C, in which case it actually becomes a pro-oxidant and kills cancer cells! This is certainly a treatment I am going to consider, especially if I decide to forgo the external beam radiation treatment.
Tomorrow is back to a normal work day. I'm getting my energy levels back up from my test dose on Friday, and feeling to about how I was on Thursday. I can't believe how much starting a raw diet has helped me, even though my metabolism has continued to plummet more and more each day. My TSH is above 30 now* (if you know anything about thyroid hormones, you won't even be able to imagine how that probably feels). Yet since starting this diet I have gained more energy than right before I started the diet, my hair loss has almost stopped, my bloating improved by about 3 pounds (I'm now only 2 pounds over my weight right before I stopped the hormones), and digestion is completely normal now. My naturopath wasn't surprised at all.
My RAI treatment is still scheduled for Wednesday. I'll be admitted at noon and staying in the hospital for 2 to 4 days in isolation, but there is an open door so visitors are able to talk to me from the doorway (they just can't come in my room). I'll have my cellphone with me in a plastic baggie and hopefully I can access the touch screen sufficiently through that, but once the battery is dead I won't be able to recharge it. I'll have a phone in my room (you remember, the old-fashioned kind, connected to a plug in the wall!), though, if you want to talk to me. If I can fit it into my busy schedule of reading, napping, watching TV, and...um I can't think of anything else ;-)
Apparently Jesse and I are in denial about my impending hospital stay because we just bought tons more produce today. You should see our fridge, it's completely packed with veggies! We also brought home the newest member to our family: a fancy grill! (I don't plan on being 100% raw! and it's Lisa-approved as it has a built in basket for veggies) So please expect lots of BBQ's at the Marsaudon-Follet residence this summer.
The amount of relief, balance, and peace I feel right now is immense. Having put that scan behind me, which I've been anticipating since the day of my diagnosis on March 18, feels so good. The results weren't perfect and I felt some disappointment at first, but the sense of relief that there are no apparent distant metastasis far overwhelms that. Now we just need this RAI to kick butt and destroy all of that cancer in my neck! Go radioactive iodine, Go!
Thank you all for sharing so much love & support. I really felt it today.
xoxo,
Lisa Rose
*Coming soon: a short lesson on thyroid hormones for those of you who aren't healthcare providers nor experts because of personal thyroid issues.
Sunday, June 5, 2011
Scan day tomorrow
Happy Sunday from sunshiny Seattle. We've had a gorgeous weekend, and although I haven't had much energy and getting out of bed is the biggest challenge of my day, we've taken in our share of rays at the park, the Japanese gardens, and at the beach down the street. Last night Jamie and I went to Pacific NW Ballet's Giselle which was quite a treat. We have season tickets, but this ballet was unique in that the score was written just for the ballet, and the choreography was very close to the original choreography from the 1800's. There was a lot of miming and signing and the dancing was much more of a romantic era style than classical. This evening we are going for a sail and even if I can't help much on the boat, just being outside is always healing. This afternoon was spent at Frenchy's Day Spa, a very girlie spa in Madison Park. It sounds shallow, but I can't even express how much pampering treatments help my mood and my body. Being able to actually relax and slow my brain down for a bit, and having an appointment that is actually fun instead of something I dread, is really important to me right now.
Besides the extreme fatigue, I have been experiencing another side effect I was warned about: neck soreness from the thyroid cells & salivary glands taking up the iodine. It feels like right after surgery, but not quite as bad as I'm still able to eat without too much difficulty. I am so eager to get back to being my old self, even though I know it will take a while for my thyroid hormone levels to build back up after I get to start taking them again after treatment.
Preparing mentally & physically for my scan tomorrow...wish me luck, or send good thoughts, good karma, or whatever it is I need.
xoxo,
Lisa
Besides the extreme fatigue, I have been experiencing another side effect I was warned about: neck soreness from the thyroid cells & salivary glands taking up the iodine. It feels like right after surgery, but not quite as bad as I'm still able to eat without too much difficulty. I am so eager to get back to being my old self, even though I know it will take a while for my thyroid hormone levels to build back up after I get to start taking them again after treatment.
Preparing mentally & physically for my scan tomorrow...wish me luck, or send good thoughts, good karma, or whatever it is I need.
xoxo,
Lisa
Friday, June 3, 2011
Radioactive
I'm officially radioactive now; I had my test dose of I-131 today. It is a small dose, 3 mci compared to the 200 mci I'll be receiving in the hospital on Wednesday, but I still have to take precautions. For 24 hours after my dose I can't have any close contact with anyone so Jesse and Zeus have to stay at least 3 feet away (and sleep in the guest room!). I have to flush the toilet twice, wash my hands extra carefully, and wash my dishes separately as most of the radioactivity is excreted through bodily fluids. As my nurse said, "no kissy face!" That rule is in effect until 7 days after my full dose. I'm sure Zeus appreciates that I won't try to kiss him :)
I haven't experienced any side effects yet, which are usually nausea and dry mouth, but I'm utterly exhausted. We tried a trip to the farmers market but after only ten or fifteen minutes I felt like I'd climbed a mountain. So I've spent the remainder of the day sitting at the park, lying in bed, or on the couch. What a shame, as it's such a gorgeous day and this weekend is forecasted to be in the high 70's. I have fun plans, like Pacific Northwest Ballet's Giselle tomorrow night, and mani-pedis with the doc I work for and sailing on Sunday. I hope I can gather the energy for all this fun.
For now, anxiously awaiting my full body scan on Monday. It takes 60-90 minutes...I hope I can hold still for that long. I might have to ask for a little something to help me relax.
My doctor said I really will glow...haven't noticed anything yet but we'll find out tonight!
Peace,
Lisa
I haven't experienced any side effects yet, which are usually nausea and dry mouth, but I'm utterly exhausted. We tried a trip to the farmers market but after only ten or fifteen minutes I felt like I'd climbed a mountain. So I've spent the remainder of the day sitting at the park, lying in bed, or on the couch. What a shame, as it's such a gorgeous day and this weekend is forecasted to be in the high 70's. I have fun plans, like Pacific Northwest Ballet's Giselle tomorrow night, and mani-pedis with the doc I work for and sailing on Sunday. I hope I can gather the energy for all this fun.
For now, anxiously awaiting my full body scan on Monday. It takes 60-90 minutes...I hope I can hold still for that long. I might have to ask for a little something to help me relax.
My doctor said I really will glow...haven't noticed anything yet but we'll find out tonight!
Peace,
Lisa
Wednesday, June 1, 2011
Quick update
Hello there,
Just wanted to let you know I'm getting through each day. I have good days and bad days - yesterday was really tough; I just felt like a slug. It doesn't help that Jesse is in Ohio for work until tomorrow so home is a bit lonely. Zeus is great but...a little smellier. Today my energy levels are back up and I feel much more balanced. Someone must be sending Reiki. Today was my first time experiencing the intense intolerance to cold that I've been hearing about. I was freezing cold at work while my coworkers all agreed it was quite warm (or maybe it's because most of them are perimenopausal? ;) Anyway, the thermometer at my desk said 72 but I was quite sure it was only 42 at the most. Hopefully a bubble bath can cure that, especially with my favorite Lush bubble bar.
The strict low-iodine diet is perhaps the most difficult part of this phase (so far), but my raw food diet has really helped my body and the bloating has improved a whole lot as well as my digestion. I can't imagine how hard this diet would be for someone who normally eats a Standard American Diet. I'm used to preparing meals at home and this has inspired me to get a bit more creative.
A great piece of advice from a documentary I just watched...
Don't do something 'so you won't die.' Don't juice 'so you won't die.' Don't exercise 'so you won't die.' Do something so that you can live this day and this life to its fullest. Juice so that you can live this day and this life to its fullest. Exercise so you can live this day and this life to its fullest.
Just wanted to let you know I'm getting through each day. I have good days and bad days - yesterday was really tough; I just felt like a slug. It doesn't help that Jesse is in Ohio for work until tomorrow so home is a bit lonely. Zeus is great but...a little smellier. Today my energy levels are back up and I feel much more balanced. Someone must be sending Reiki. Today was my first time experiencing the intense intolerance to cold that I've been hearing about. I was freezing cold at work while my coworkers all agreed it was quite warm (or maybe it's because most of them are perimenopausal? ;) Anyway, the thermometer at my desk said 72 but I was quite sure it was only 42 at the most. Hopefully a bubble bath can cure that, especially with my favorite Lush bubble bar.
The strict low-iodine diet is perhaps the most difficult part of this phase (so far), but my raw food diet has really helped my body and the bloating has improved a whole lot as well as my digestion. I can't imagine how hard this diet would be for someone who normally eats a Standard American Diet. I'm used to preparing meals at home and this has inspired me to get a bit more creative.
A great piece of advice from a documentary I just watched...
Don't do something 'so you won't die.' Don't juice 'so you won't die.' Don't exercise 'so you won't die.' Do something so that you can live this day and this life to its fullest. Juice so that you can live this day and this life to its fullest. Exercise so you can live this day and this life to its fullest.
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